The mother of a nine-year-old boy living with a disease that affects only 220 people worldwide has described her battle to find treatment.

Little Jack Christmas, from Gainford Grove, east Hull, is only one of 16 people in the UK that live with the very rare Mowat-Wilson Syndrome.

Mowat-Wilson Syndrome is a rare genetic condition that affects many parts of the body. Major signs of this disorder include distinctive facial features, intellectual disability, delayed development, an intestinal disorder (Hirchsprung disease) and other birth defects.

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Dawn said: “We had to go over to the US which cost a total of £30,000 for myself, my husband, Jack and my other son, Robert, who is 19. We were there for three weeks to see a neurological doctor about how we can help get his seizures under control.

“The doctors advised us about what we can do and how to change his medication up which we followed and he’s been seizure free for four weeks up until last Friday.

“Obviously, although other countries are still in the early stages or research they are still more advanced than the UK.”

Jack was diagnosed with the condition in 2012 when he was just four years old, however the family had to take a long road before the diagnoses was given.

Dawn continued: “It’s a mutation of the gene, people are born with it but it’s so rare, especially in this country. It wasn’t until his DNA was sent to Paris for more research that we finally got a diagnoses. Jack was the 171st person born with Mowat-Wilson Syndrome.

Dawn is working with Life for a Kid to put on the charity event at the Goodfellowship Inn Photograph Richard Addison

“Recently, he’s been having a lot of seizures which is why we went to the US to try and get them under control. Jack is under the Leeds Children’s Hospital and we’ve been backwards and forwards from there. Sometimes, Leeds do come to us too so we don’t have to travel all the time.

“The four weeks without a seizure was great. He is more prone to them when he is poorly and he has been which is why I think he had one last week.”

The family work with the Life for a Kid charity that aim’s to help children under the age of 16 by offering funds and equipment to help them lead a better life.